Pushing the boundaries: an evaluation of the Photographs of Meaning (POM) program for pediatric palliative caregivers (PPCGs)*

ABSTRACT

Translational research is seemingly ubiquitous, yet complex and difficult to concretely define. We contribute to this conversation by reflectively and critically evaluating a collaborative, multidisciplinary program called the Photographs of Meaning (POM) for pediatric palliative caregivers. The POM program brings together the public health issue of caregiving with community-based-art methodology and engagement. Following four stages for public health research; assessment, design, implementation, and evaluation, we focus on photovoice as a valuable methodological tool that can be integral to translational work in communication. The program evaluation illustrates the main points of translation from the first iteration of POM to the second, as we challenge the traditional ‘bench to bedside’ notion of translational research and offer a more relational approach where communication scholars can engage participants and community networks through photographs. We end with implications and recommendations for scholars working with pediatric palliative caregivers and public health research more generally.

KEYWORDS:

• Translational research
• public health
• photovoice
• support
• pediatric palliative caregivers
• Photographs of Meaning

Acknowledgements

The authors would like to acknowledge and thank the caregivers who participated in the program. The authors could not have done the project without support from Palliative Care Buffalo’s Essential Care program, especially Terri Ryan, RN, Abigail Unger, LCAT, MT-BC, and Deborah Powers, RN. The authors would like to acknowledge Jennifer Breier and David Bywra who engaged in conversations related to POM-PPCG at different times throughout the process. Christopher Kerr, MD, PhD, CEO and CMO of Hospice and Palliative Care Buffalo, Dean Robin G. Schulze, PhD, College of Arts and Sciences University at Buffalo, Hospice Foundation of Western New York, Talking Pictures LLC, Ralph C. Wilson, Jr Foundation, Roswell Park Comprehensive Cancer Center, the Hubbell family (in memory of Jayne Hubbell), the Mary and Antonio Napoli Endowment Fund, and the Dr Elmer and Mollie Milch Endowment Fund for their ongoing support. Finally, we thank Tom Feeley for this continued support in this endeavor and the reviewers for their helpful comments to strengthen the manuscript.

Disclosure statement

No potential conflict of interest was reported by the authors.